News archive

MDC Professionals Network Meeting

The Muscular Dystrophy Campaign is pleased to invite you to the 2008 Professionals Network Meeting. The meeting designed for health and social care professionals, teaching and support staff working in a variety of disciplines with children and adults with neuromuscular conditions will take place on 14th May 2008 in Leeds.

90% off Activity Break in Devon

Affordable fun for young people with disabilities in Milton Keynes

Good Luck to all of the Sahara Trekkers!

Good Luck to all the Sahara Trekkers who head off on Saturday 3 November.


Good luck to all our Great South Runners!

Good luck to all our Great South Runners!


Rolling with Laughter

Following her critically acclaimed run at Edinburgh’s Fringe Festival this August, the highly talented Natasha Wood brings her one-woman autobiographical play ‘Rolling with Laughter’ to Hampstead’s beautiful New End Theatre from Tues 2 – Sunday 21 October. MDC members can get 2 tickets fro the price of 1!

Scottish Conference

The Muscular Dystrophy Campaign’s Scottish conference took place on Saturday 22 September. The presence of several staff from the London Office helped to remind everyone that the Scottish membership is distinctive but very much part of the main organisation.

Stuart, A Life Backwards

BBC2, Sunday 23 September at 9pm

When Stuart Shorter, a homeless alcoholic who has facioscapulohumeral muscular dystrophy (FSH), meets writer and charity worker Alexander Masters, they strike up an unlikely friendship. As Alexander learns more about Stuart’s complicated life and traumatic childhood he marvels at Stuart’s resilient personality and dry sense of humour.

Lobby at the Scottish Parliament on 19 September

Lobby at the Scottish Parliament – Holyrood, 4pm on Wednesday 19 September.

Farewell from the Disability Rights Commission

The Disability Rights Commission (DRC) closes at the end of this month, to make way for the new Commission for Equality and Human Rights (CEHR), established under the Equality Act 2006, which opens on 1 October.

The Big Push Fun Day – Saturday 15 September

Get your weekend off to a smashing start and come along to our Fun Day, which is being held in Westminster to launch The Big Push week.

Launch of a new UK wide ‘Specialist Vehicle Assessment Service’

The Forum of Mobility Centres are proud to announce that from 1st August 2007 a comprehensive range of adapted vehicles, allowing independent access by a wheelchair user, will be available for assessment, demonstration and tuition at fifteen mobility centres throughout the UK.

John Laing Rugby Cup

Spencer Kelly and Edward Common (both DMD) took part in the first ever John Laing Rugby Cup held at the Percy Hedley Sports Academy in Newcastle.

Victoria Barr takes to the sky again!

Victoria Barr, who has limb girdle muscular dystrophy, is about to head to South Africa for 6 weeks of training with 'Flying Scholarships for the disabled'.

Website details accessible routes to Capitals sights

directenquiries.com, the Nationwide Access Register, today launches a new service for Londoners and their visitors.

Victoria Coach Station opens new Mobility Assistance Lounge

Victoria Coach Station has opened a new 'Mobility Assistance Lounge' for elderly and disabled passengers who need help getting around the station.

How Motability helps disabled people become mobile

A new information pack, aimed at health professionals and public sector advisors, is proving useful in keeping them up-to-date about the help that is available for disabled people and their families through the Motability Scheme.


Establishment of a Limb Girdle Muscular Dystrophy Network

We are looking to set up a Limb Girdle muscular dystrophy network for people affected by a Limb Girdle muscular dystrophy and their families/friends (and professionals working in this field) and hope that you might be interested in joining.

APCC Special Interest Group meeting

Association of Paediatric Chartered Physiotherapists (APCP), Special Interest Group

Winston Churchill Travelling Fellowships - chance of a lifetime 2008

The Winston Churchill Memorial Trust offers Fellowships to British Citizens resident in the UK and from all walks of life to acquire knowledge and experience abroad.


Queen honours Judy with an MBE

A Disabled Kenilworth woman who has taken part in scores of fundraisers since her 40th birthday has been made an MBE in the Queen's Birthday Honours.

Get out and GOJO over the summer!

Young disabled people across the country are being encouraged to 'Get out and GOJO' over the summer armed with a series of accessible event and listings guides produced by the Disability Rights Commission.


European Air Rules to protect disabled passengers need an ‘Enforcer’

New European Air rules to ensure fairer treatment for disabled passengers are welcome but need an enforcing body says the Disability Rights Commission (DRC).

Nurseries invited to give Muscular Dystrophy the Big Push

The Muscular Dystrophy Campaign is inviting nurseries across the UK to organise a Big Buggy Push. The series of fundraising walks aimed at pre-school children and their carers plays an important role in the charity’s wider Big Push Week from 15 to 22 September 2007 – a nationwide campaign to raise much needed funds for, and awareness of, the fight against muscle disease.

Housing company gets views of disabled customers

The Gateshead Housing Company is set to ask disabled people across the borough how it can make its services even more accessible.

Holiday help for lone parents with disabled children

One Parent Families|Gingerbread has produced a booklet for lone parents bringing up disabled children. The booklet, The Lone Parents’ Guide to Caring for a Child with Additional Needs, gives advice and information about a range of issues, including ideas for play and leisure activities, and information about travelling with children who have disabilities that affect mobility.

Thank you to our amazing British 10K team!

Thank you to our amazing British 10K team who donned their orange Muscular Dystrophy Campaign t-shirts and along with over 20,000 other runners, pounded the streets past London's top landmarks for 10km.

MPs join forces to raise awareness of muscle disease

Ivan Lewis MP, Minister for Health, was joined by MPs and supporters of the Muscular Dystrophy Campaign at a House of Lords reception on 3rd July to raise awareness of muscle disease. The charity is calling on the new Government to pay more attention to young adults with disabilities, who often face difficulties when transferring from children’s to adult’s services – the ‘transition’ phase.

New initiative to increase employment opportunities for disabled people

Employers should make use of the wide pool of resources and skills that disabled employees have to offer according to John Hutton, Secretary of State for the Department for Work & Pensions.

Help for new carers

Carers UK launches new booklet for first-time carers. An essential new booklet to help those who have recently become a carer is published on Thursday 7 June by Carers UK.

Motability Operations to provide online access information

Motability Operations, the UK’s leading provider of cars for disabled people, is listing all their 4,000 plus dealer agents on www.directenquiries.com, the Nationwide Access Register.


London Underground launches work experience programme for disabled people across whole Tube Network

Transport for London announce that following a previous pilot scheme on the Piccadilly Line, London Underground will be extending their Work Experience Programme for Disabled People across the network.

New FSH website

A new FSH MD website that focuses on the delivery of reliable and accurate information about the condition has been launched in April 2007.

Potential treatment for Duchenne

The Oxford based biotechnology company VASTox has announced today the selection of a candidate drug, VOX C1100, for preclinical testing to treat Duchenne muscular dystrophy and anticipates that the drug could be tested in affected boys by mid-2008.

24 Hour Dubai Accessibility Endurance Challenge

British adventurer, Michael McGrath, is flying to Dubai to check out wheelchair access at its tourist attractions, places of interest and hotels in a marathon 24hr period. He will see at first hand whether Dubai is indeed one of the most accessible tourist destinations in the world. His schedule in Dubai is being sponsored by Hilton Hotels.

HFEA launches public consultation on hybrid embryos

The Human Embryology and Fertilisation Authority (HFEA) today launched a public consultation to explore people’s views on whether or not scientists should be allowed to create embryos containing animal DNA for research purposes.


Duchenne: PTC124 daily pill research 'encouraging'

The science journal 'Nature' today published research which has encouraging results for some forms of Duchenne muscular dystrophy through the use of a daily pill.

Free ‘equality workshops’ at South West disability show

Living Options Devon will be running a series of informative hands-on courses, promoting equality in the workplace and the wider community to visitors from all over the UK at the What Disability? South West exhibition (5-6 June at Exeter’s Westpoint Centre).

Good luck to MDC Marathon Runners

All staff at the Muscular Dystrophy Campaign would like to wish the 110 runners who are taking part in the 2007 Flora London Marathon the best of luck. If you are running for the charity, there's also some important information for you.

MRC Centre for Neuromuscular Diseases to be launched

The Medical Research Council (MRC) has announced a grant of £2.8 million to support the creation of the MRC Centre for Neuromuscular Diseases, to be led by Mike Hanna.

London Underground launches groundbreaking accessibility information service to ease travel

London Underground launched its new detailed, interactive service on Easter Monday 9 April, which allows passengers to understand the access available at every station across the network, particularly the routes between street and platforms.

MDC Statement - Select Committee Report on Hybrid and Chimera Embryos

The Muscular Dystrophy Campaign's statement in response to the report of the House of Commons Science and Technology Select Committee on the Government's proposals for the regulation of hybrid and chimera embryos.

Beyond Boundries Live exhibiton 2007

A national consumer show which will offer disabled visitors the opportunity to get involved in a wide range of activities is to be staged.

Young Pavement Artists Competition 2007 launched

Could you be a pavement Picasso?

The Muscular Dystrophy Campaign has launched its Young Pavement Artists Competition 2007 and is on the look out for the next Picasso. Young people aged 4-19 are invited to take part in the national art-based, educational and fundraising initiative where they get the chance to create their masterpieces on a novel canvas – the pavement.

Unions and employers welcome better deal for disabled workers

Trade unions fighting for a better deal for disabled workers are celebrating the appointment of more than 500 Disability Champions who help disabled workers to negotiate with employers to fulfil their needs, and work to raise awareness of issues at work.

Strategic Plan 2007 - have your say ....

Over the last few months the Muscular Dystrophy Campaign has been working in partnership with our scientists and clinicians, under the guidance of our Trustees, to review the services that we offer and the way that the charity runs itself (its governance). This has been the first phase of a lengthy review of the charity’s direction and strategy, which has been driven by a number of factors.

A 'FIRST' for Kent

The Centre for Independent Living Kent (CILK) has announced the launch of the FIRST mobile centre for independent living in the UK.

The Open University launches Disability Equality Scheme

The Open University has underlined its commitment to promoting disability equality and preventing discrimination in all areas of its work by launching a new scheme. The Disability Equality Scheme was launched on 6 February to enable more people in more places to achieve their potential through education.

Prudential raises £195,000 for muscle disease

Generous employees from Prudential have raised a whopping £195,000 for the company’s charity of the year, the Muscular Dystrophy Campaign.
Employees in PruUK offices across the country and in shopping centres owned and managed by PRUPIM, Prudential’s property investment arm, raised the money to increase independence and maximise mobility of people living with muscle disease.

Robotic stem cell research

British Scientists will develop robotics to automate important stem cell research, meaning thousands of experiments will be able to be conducted at once, rather than just a handful being possible by a single scientist at work.



MDC hosts first workshop for Young Muscle Scientist Network

The Muscular Dystrophy Campaign held a one day workshop last month for young scientists working on projects currently funded by the charity. The workshop brought together the next generation of muscle scientists and gave them an opportunity to network, present their work to their peers and to find out more about the charity.

Free flight with Polly Vacher

Following her two record breaking solo flights in a single engined aircraft around the world, Polly will be flying to over 200 airfields in The United Kingdom between May 21st and July 31st 2007. She will be promoting the sale of her book "Wings Around the World", the proceeds of which will go directly to Flying Scholarships for the Disabled.

Disabled children promised better support

The government today promised improved services for disabled children and their families, including the provision of more breaks for under-pressure parents. The children, young people and families minister, Parmjit Dhanda, made the pledge as he talked out a Tory backbench bill to give families with severely disabled children a new right to short breaks.


MDC welcomes HFEA announcement on egg donation

The Human Fertilisation and Embryology Authority has agreed to allow women to donate their eggs to research projects, provided that there are strong safeguards in place to ensure the women are properly informed of the risks of the procedure and are properly protected from coercion.

The secret's out... an introduction to motability

A new DVD has been released to help raise awareness about the Motability Scheme. The DVD is fronted by actress and disability rights campaigner, Julie Fernandez. It will be useful in informing health professionals, advisory groups, social services and other charities and organisations about the help that is available through Motability.

The Open University launches Disability Equality Scheme

The Open University has underlined its commitment to promoting disability equality and preventing discrimination in all areas of its work by launching a new scheme.

Mobility Roadshow Launches the Ready, Willing and Mobile Competition

Children aged 7 to 16 could win £1,000 cash for their school, plus great prizes for themselves by coming up with a bright idea to help disabled children. The Mobility Roadshow has announced its annual Ready Willing and Mobile competition that encourages school children to think about disability, accessibility and inclusivity from a young age.

Commision for Social Care Inspection

The Commission for Social Care Inspection (CSCI) is the independent social care watchdog for England. CSCI inspects and reports on social care services to help improve quality for people who use services.


Polar Pals Flex Culinary Muscle On Ready Steady Cook

British polar explorers Michael McGrath and Pen Hadow left the cold behind on Tuesday 6 February to battle head to head in the heat of BBC 2’s “Ready, Steady, Cook” kitchen.

Disabled Facilities Grant Programme: The Government's proposals to improve programme delivery

A paper about the Government's proposals to improve the Disabled Facilities Grant Programme delivery

MDC statement on Virgin's umbilical cord blood storage scheme

The Muscular Dystrophy Campaign supports the RCOG's cautious approach to storing umbilical cord blood for non-blood-related diseases. Families affected by muscle disease are always anxious not to miss an opportunity to do the best for their children, but there is currently no evidence to recommend private cord blood banking for these genetic conditions.


"Access to Assessment" policy for disabled candidates published

The British Computer Society (BCS) has published its “Access to Assessment” policy for disabled candidates studying for its range of IT qualifications, including the European Computer Driving Licence (ECDL).

Consultation on core principles for everyone providing care to NHS patients

The NHS has launched a publication in tandem with a public consultation.
The consultation sets out a draft set of principles. All NHS and independent sector providers who sign national model NHS contracts with commissioners from April 2007 will be required to follow these principles.

MDC submits evidence to Government committee

The Muscular Dystrophy Campaign has given written evidence to the House of Commons’ Science and Technology Committee to assist its investigation into the regulation of animal/human hybrid, or “chimera”, embryo research.

International Duchenne coalition launched

Four muscular dystrophy organisations have launched a coalition that will pool knowledge and resources in an attempt to accelerate development of promising treatments and a cure for the most common childhood form of the disease, Duchenne. It's hoped that the coalition could serve as model for other muscle diseases.

MDC fundraiser wins lifetime achievement award

At 80 years old Michael Aimable is a dedicated Muscular Dystrophy Campaign runner and has received the first Lifetime Achievement Award from the Stubbington Green runners, a club based on the south coast.

Statement on hybrid embryo research ban

Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign, said: "People and families living with muscular dystrophy look to breakthroughs in science in the hope that a cure or treatment will be found for this devastating disease. The government must take their views and hopes seriously. The Muscular Dystrophy Campaign would be disappointed to see any move that broke with the UK's long tradition of well-regulated, cutting edge research.

A Great Deal for Charity

The Muscular Dystrophy Campaign will receive a donation following the 14th charity day held by ICAP, the world’s largest interdealer broker.

Clinical trial for Duchenne muscular dystrophy - an update from the scientific consortium

The MDEX Consortium was formed to develop and test a treatment for Duchenne muscular dystrophy using patches of genetic material to restore production of the essential muscle protein dystrophin. Funding from the Department of Health enabled the project to begin in January 2005. There has been considerable progress over the past 20 months in developing and testing molecular patches, preparing for the clinical trial and in obtaining some additional funding to start addressing some of the long term issues that this technique will pose.

Helpline service for lone parents with disabled children re-opened

One Parent Families’ has reopened its specialist advice service for lone parents caring for a child with a disability or long-term health problem.

New legislation to transform public services for disabled people

Approximately 45,000 public bodies will be affected by new legislation introduced on 4 December that is set to transform the lives of one in five Britons.

New advice and information for disabled people from RADAR

RADAR has produced a new ‘Get Motoring’ guide to the ins and outs of getting the best deal on purchasing or leasing a car. Released on 3 December 2006, Get Motoring is written for disabled drivers, by a disabled driver, and is available free from RADAR.

Pioneering £6.7m European network launched to aid muscle disease patients

Some of the world’s leading doctors and scientists will today join together in a multi-million pound international network aimed at improving treatment and finding cures for thousands of patients with debilitating neuromuscular diseases.

Closure of Burton Hill School, Malmesbury

The MDC Care Advisor in Bristol, Jan Smith, attended a meeting last week where it was announced that the Burton Hill School in Malmesbury will be closed in July 2007.

London Underground stations to be assessed for disabled access

London Underground has started assessments of all of its 274 stations, as part of a commitment to improve access for customers.

Support for the BDF Newlife campaign

The Muscular Dystrophy Campaign vigorously supports the BDF Newlife campaign to drastically improve the provision of equipment for disabled children, following the publication of Newlife report, “It’s Not Too Much To Ask”.

Stem cell research - questions & answers

We are aware that many people will have questions about the stem cell research being carried out in Italy. Through this question and answer page, we hope we can clarify some of the issues.

BDF Newlife launches campaign

A children's health and research charity has launched a campaign that calls for improved provision of equipment for disabled children in the UK.

Masonic Lodge's Charity of the Year fundraising

A Masonic Lodge in Eastbourne has raised more than £2,000 for the Muscular Dystrophy Campaign following a hugely successful fundraising year led by the lodge’s Worshipful Master, Bob Mulvey and his wife Sue.


Duchenne stem cell research published

Research into a potential future treatment for Duchenne muscular dystrophy using stem cells has been published this week in the leading science journal, Nature.

PPUK Conference 2006 - scientific and care update

PPUK held its 4th International Conference on 21-22 October. The event was aimed at informing parents of advances in research and care of Duchenne muscular dystrophy.

Concern as independent living organisation goes into administration

The National Centre for Independent Living has expressed concern that a service that supports hundreds of disabled people to live independently by employing their own personal assistants has gone into administration.

Improving online banking for people with mobility issues

A market research company is seeking candidates to take part in a survey about how to improve online banking for people with mobility issues.


Train operators ask disabled people to help them improve rail services

A disability rail advisory group is being set up by the Association of Train Operating Companies (ATOC) to provide train companies with a direct link to the thoughts of disabled people in relation to how rail services for them can be improved.

MDC to feature on BBC Radio Wales

It’s time to tune your radios, computers, televisions to BBC Radio Wales and/or BBC Cymru because from Sunday 5 November the Muscular Dystrophy Campaign will be featured on both radio stations as the charity of the week.

Impact Report for 2005-06 published

The Impact Report 2005-06 for the Muscular Dystrophy Campaign was published on Friday 27 October. The report replaces the old-style annual review.

Scientific update from the PPUK conference

PPUK held its 4th International Conference, aimed at informing parents of advances in research and care of Duchenne muscular dystrophy, on 21-22 October.

Flying Scholarships for the Disabled

Anyone wishing to apply for a scholarship with Flying Scholarships for the Disabled should do so by 5 January 2007.

Moving On in the Community - Surrey

Moving On in the Community is a new initiative in north west Surrey (Woking, Guildford and surrounding areas), designed to work with disabled people who want to make changes to their lives. There is no cost for the support and the project is part of a three-year pilot.


Healthcare Commission Disability Equality Scheme Questionnaire

The Healthcare Commission is seeking to engage with disabled people and people working in the sector in order to inform the Healthcare Commission’s development of its Disability Equality Scheme, which aims to improve processes and service provision and promote equality for all disabled people.

NorthStar Clinical Database Launch

A clinical database, developed by a network of specialist paediatric neuromuscular centres across the UK, was launched at a special event at the Science Museum in London, on Thursday 12 October. The development of the database has been supported and substantially funded by the Muscular Dystrophy Campaign, and Chris Cope and Michael McGrath who walked to the North Pole to raise money.

Carers benefits unclaimed

Unclaimed benefits for carers now stands at £740 million. This major issue will, once again, be the central plank of Carers' Rights Day - the annual national day of action organised by Carers UK, which will be held on 8 December 2006.

National charity calls for more services for the disabled in Scotland

A unique employment training centre in Edinburgh celebrated its official opening by dynamic blind entrepreneur and personality Amar Latif on 2 October 2006. MSPs, local employers and key voluntary sector players attended the centre, which aims to enhance the services of the national charity Employment Opportunities, dedicated to creating routes into employment for people with all disabilities and medical conditions.

Additional choice for those who need specialised vehicles or adaptations to their car

Motability, which has the key role in enabling independent mobility for disabled people, has announced its widest ever range of affordable cars and services. The biggest change is the additional choice for those who need specialised vehicles or adaptations in their car. The changes, being introduced from 1 October 2006, will provide much lower prices for those with greater levels of disability.

First UK parking and motoring atlas for Blue Badge drivers

The 190 page atlas comprises of quality Collins mapping split effectively into three mapping types: a national road atlas; urban area mapping; and detailed street mapping of 65 city centres featuring all the parking options and facilities for Blue Badge holders.

Children break bunting world record to raise myopathy awareness

As an awareness-building and fundraising project for a new charity to help find a cure for her son’s rare muscle condition (myotubular myopathy), Wendy Hughes recently enlisted the help of over 6,000 school children in Buckinghamshire, as well as some brownie, guide and other national schools where other children with myotubular myopathy attend, to attempt a Guinness World Record to make the World’s Longest Bunting Line.

The Human Rights Award – Best Train Operating Company For Disabled People

As part of the 25th Anniversary celebration of the Disabled Persons Rail Card, the Association of Train Operating Companies (ATOC) and the Royal Association for Disability and Rehabilitation, (RADAR) are launching the Human Rights Award for Best Train Operating Company

ATOC Celebrates 25 Years Of The Disabled Persons Railcard

Operating Companies (ATOC) and BT will host a 25th Anniversary celebration where past, present and future of the card will be commemorated.

London Summer of Sport

Paralympic champion Giles Long MBE is backing the London Summer of Sport and will be at Finchley Lido Leisure Centre on Tuesday 5 September, when a free swimming session will be taking place.

Essential Information For Families With Disabled Children

Contact a Family, the charity for families with disabled children, has produced two new factsheets this summer, which are packed full of useful information for parents.

Coverage on new 'anti muscle wasting' pill

The Muscular Dystrophy Campaign has responded to articles published on 31 August 2006 about a new 'gym in a bottle' pill that claims to prevent muscle wastage.

City Employment Boost For Disabled People

A new city centre Remploy branch was officially opened in Plymouth last week. Invited guests attended the event which showcased how the facility in Mayflower House on Armada Way provides specialist employment services for people with disabilities and long-term health conditions.

GlaxoSmithKline makes major donation to MDC

The Muscular Dystrophy Campaign is delighted to announce that GlaxoSmithKline has recently awarded the charity £166,896 to fund a three year medical research project which investigates a pioneering and challenging approach to prevent the inheritance of mitochondrial myopathies.

Changing Places Campaign

The Changing Places Consortium has launched a campaign on behalf of the thousands of people with profound and multiple learning disabilities and their carers, and the many other disabled people who cannot use standard accessible toilets. Changing places toilets provide the right equipment, enough space and above all a safe and clean environment.

Myotubular (centronuclear) myopathy factsheet updated

The Information and Advice team has published an updated version of the myotubular (centronuclear) myopathy factsheet.

Access Consultants for disabled people

From 10 August 2006, for the first time in the UK, access for disabled people will need to be formally considered and assessed at planning stage. This is a milestone in the consideration of access in the design and building process. From this date, there is a new national requirement for design and access statements to accompany all applications for planning permission and listed building consent.

Trial The Week and Support MDC

This is a fantastic opportunity to help raise valuable funds for the Muscular Dystrophy Campaign by taking advantage of a charity promotion being run by The Week magazine. The Week is a weekly digest of British and foreign press that takes less than 1 hour to read.

Hope for Therapy from Istanbul - a report from the International Congress on Neuromuscular Diseases

From the 2 – 7 July the 11th International Congress on Neuromuscular Diseases took place in Istanbul. This event only happens every four years and is a major platform for scientists interested in muscle function and disease, to meet one another and discuss the latest scientific results. Dr. Marita Pohlschmidt, the Muscular Dystrophy Campaign's Research Director visited the conference and has given an account of the event.

Communication of genetic information

A Research Fellow and Project Manager is working on a project funded by the Wellcome Trust, "The Transgenerational Communication of Genetic Information" which is studying communication and disclosure in various disease contexts, including Becker muscular dystrophy and myotonic dystrophy.

Put the kettle on for charity

A host of celebrity chefs are supporting national disability charity, Motability, by calling on people across the UK to hold a tea party and raise funds for disabled people.

Independent Living Fund - Review Consultation

The Department for Work and Pensions (DWP) has commissioned independent consultants Melanie Henwood and Bob Hudson to carry out a review if the Independent Living Fund. This review will look at the ILF alongside other recent policy developments including the emergence of Direct Payments, the In-Control pilots, and the new models of Individual Budgets.

Myotonic Dystrophy Research

US scientists have developed a mouse model which might enable them to find a treatment for people with myotonic dystrophy. The scientists, from the University of Virginia, created mice carrying the DNA that causes myotonic dystrophy that could either be turned on or off. If the DNA was switched on the mice developed myotonic dystrophy, but if it was turned off the heart and skeletal muscle function of most of the mice fully recovered

Summer Draw 2006 – Winners announced

The Muscular Dystrophy Campaign’s Summer Draw took place today with the £2000 ticket going to York. Other winning tickets from all around the country are listed below. Thanks to everybody who supported the Summer draw through buying or selling raffle tickets. Whilst final figures are not yet available, we believe the draw has raised over £170,000 towards funding muscular dystrophy care and research.

Advice Plus & CMT United Kingdon

CMT United Kingdom are putting together a bid for the Big Lottery Fund's Advice Plus programme and need your help. Please complete questionnaire to help assess the need for the service. All responses needed by the middle of August.

Department of Health Research Project - experience of rehabilitation services for people with long-term neurological conditions.

People with muscular dystrophy required to take part in telephone interview on their experience of local rehabilitation services. A team based at Queens Medical Centre, Nottingham is undertaking research for the Department Of Health on the provision of rehabilitation services for people with long-term neurological conditions in England. The research is related to the National Service Framework for people with long-term conditions.


BBC seek wheelchair accessible flat or bungalow for new film drama.

The BBC are about to start filming a 12 week drama featuring a wheelchair basketball team. For one scene they require use of a wheelchair adapted flat or bungalow, preferably in North or north-west London within easy travelling distance of Elstree.

The Ipsos MORI survey on public attitudes to social care.

Survey on public attitudes to social care reveals gulf between expectation and provision. Support from social care agencies to enable people to live at home in the advent of a disability or long-term health condition is a key expectation of the British public, an Ipsos MORI survey reveals today.

Equality 2025 – the UK Advisory Network on Disability Equality.

Have your say!

If you are a disabled person or someone with a long-term health problem and want the chance to tell the government how this affects your life, and to help them design better services and policies for you then then this could be the opportunity you've been waiting for. Equality 2025 - the UK Advisory Network on Disability Equality will be a new way for disabled people and those with long-term health problems to talk to the government about the issues that are important to them. The Network will be made up of members from a variety of backgrounds and communities and with a wide range of skills and experience.

Schools policy risks failing disabled children

The Disability Rights Commission (DRC) is calling for a five point plan to be adopted by the Government as a matter of urgency to deal with an inflexible and under-demanding education system that delivers low opportunities and holds low expectations for many disabled and Special Educational Needs (SEN) children.

The DRC has brought forward these recommendations after the publication of the Commons Education and Skills Committee report into Special Educational Needs.

Accessible house swap site launched

A new enterprise enabling disabled people to travel more freely has been launched by a group of friends frustrated by lack of choice. Called matchinghouses.com, the project is based on the established principle of house swapping but has been adapted to suit the needs of disabled people by offering a website - www.matchinghouses.com - to bring people with the same or similar accessibility requirements together.

Race Against Time lobby 2006

On Wednesday 28 June the Race Against Time lobby of Parliament took place in Westminster. Over 150 Individuals and families affected by Duchenne muscular dystrophy turned up to lobby their MPs and to get the message heard that more money is needed for research into Duchenne.

New wheelchair guidelines issued by the Muscular Dystrophy Campaign

Children and adults with muscular dystrophy and other neuromuscular conditions will receive improved wheelchair assessments thanks to new wheelchair guidelines, published by the Muscular Dystrophy Campaign.

Dame Kelly Holmes helps raise money for Treloar School

Double Olympic Champion Dame Kelly Holmes helped thousands of schoolchildren to claim a world record when they lined London's streets in the biggest ever children's Pass the Parcel parade. The inspirational Kelly Holmes was there to help raise money for Treloar School which is the 2006 Lord Mayor's charity.

Claim the Buses in London

Transport for All and Transport for London have organised a day of action to claim the buses for disabled people.

Man to shave his head to raise money Myotubular Trust

Man to shave his head to raise money Myotubular Trust a charity that seeks to raise money to fund research into finding a cure for Myotubular Myopathy. Myotubular Myopathy is a rare muscle condition which affects mostly boys at birth, and sometimes an even rarer form develops later in life affecting both boys and girls. It causes profound muscle weakness. Most critically it affects the muscles that control breathing and swallowing and is a constant threat to life - a simple cold could prove fatal. Sadly many do not survive their first year of life.Read more on myotubular myopathy.

Muscular Dystrophy Campaign launch new wheelchair guidelines in Leeds

Children and adults in Leeds with muscular dystrophy and other neuromuscular conditions will receive improved wheelchair assessments thanks to new wheelchair guidelines, published by the Muscular Dystrophy Campaign.

MDC Member talks about new PGH technique

A Muscular Dystrophy Campaign Member has been giving her views on the new genetic screening technique developed by scientists in London.

Celebrities back charity's Get Your Kit On campaign

As football fever grips the nation, Motability is gearing up for the launch of its 2006 'Get Your Kit On' campaign, which kicks off on 20 June - the same day as the England v Sweden World Cup match. Everyone can join in by wearing their team's football shirt at home, work or school and donating £1 to Motability to help people with disabilities get mobile.

Ferries Moving For Disabled People - But Could Be Faster

The Disabled Persons Transport Advisory Committee (DPTAC) has published research showing how thoroughly the shipping industry has taken its guidance on improving the accessibility of passenger ships, ferries and ports to disabled people. The guidance issued in 2000 expanded on guidance produced by the International Maritime Organisation.

MDC Members invited to design cards for Queen

Muscular Dystrophy Campaign Members are being invited to design birthday cards with a personal message for the Queen, as she celebrates her 80th birthday this year.

Bollywood strikes the World Cup

A teenager with muscular dystrophy has inspired her father to write an England World Cup Song with a difference to raise money for charity.


New Buyers' Protection Guide

A new guide that aims to save people both money and the disappointment of being let down if they are looking to buy a mobility product, such as a wheelchair or bathlift, has been launched.

Research project seeks participants

A doctoral candidate in the Rehabilitation Counseling Program at Michigan State University is inviting people to take part in a project that examines the relationship between acceptance of disability and life satisfaction.  


New guide you can trust

A new guide – Britain’s Accessible Places to Stay – has been launched at a conference on access and tourism organized by the national campaign Tourism for All UK.

Thank You to the MDC Marathon Runners

A huge thank you to all the brave people who ran for the Muscular Dystrophy Campaign in the 26th Flora London Marathon, which took place on Sunday 23 April. We had 122 runners taking part, and all of them did themselves and the charity proud. It is hoped that the grand total from our runners' fundraising efforts will be a stunning £185,000!

DFSG launch new website

The Duchenne Family Support Group has recently launched a brand new
website providing regularly updated news and information.


MDC Member's successful campaign for Larksfield

Following concerted pressure and campaigning, residents at Larksfield supported living scheme, have won their fight to keep the residential area open. The group, led by MDC member, Lee Thorne, were delighted to learn the good news.

Product is First Treatment for Pompe Disease

Genzyme Corporation announced today that it has received marketing authorization for MyozymeTM (alglucosidase alfa) in the European Union. Myozyme has been approved for long-term enzyme replacement therapy in patients with a confirmed diagnosis of Pompe disease.

Linda and Sue on BBC Breakfast

Muscular Dystrophy Campaign President Sue Barker, and Trustee Linda Ball promoted the work of the charity to millions last Wednesday, 12 April, by appearing on BBC1 Breakfast.

Animal model for facioscapulohumeral muscular dystrophy (FSH) developed

Through a combined effort, researchers at the University of Massachusetts, USA, and at univerisites in Pavia, Milano and Modena have identified a gene which plays a strong role in causing facioscapulohumeral muscular dystrophy (FSH), a muscle weakening and wasting disease affecting approximately 1 in 20,000 people in Britain. Currently there is no cure for this disease and the genetic mechanism which leads to the disease is not fully understood. The breakthrough was achieved by generating an animal model for the disease – the genetic defect was introduced into the DNA of mice.

Makro launches charity partnership with MDC

A Croydon store welcomed UK Strongman, Phil Wright, onto its shop floor on Wednesday 5 April when it launched its charity partnership with the Muscular Dystrophy Campaign.

Plymouth Music Zone and the BBC bring together a 'Power Pack'

Plymouth Music Zone, Space for Sport and Arts, TR2, Breeze and the BBC, bring together a 'Power Pack' - a group of young people with muscular dystrophy - to learn new skills in film-making, music and dance in order to produce their own pop music video.


Volunteering opportunities with MDC

The Muscular Dystrophy Campaign is currently setting up new self help groups, which aim to provide information and support to people with neuromuscular disorders and their families and carers across the North of England. And we're looking for volunteers to help in a variety of ways.

Canoeing to raise money for the Muscular Dystrophy Campaign

James Church has Becker muscular dystrophy. He is devoting his Easter Bank Holiday (14 - 17 April) to fundraising for the Muscular Dystrophy Campaign by taking part in the Devizes to Westminster Canoe Race - a distance of 125 miles!

Local Boy Inspires Kate to Run

An eight year old boy from Droitwich has inspired a local lady to try and raise over £1,500 for the Muscular Dystrophy Campaign by running in this year’s Flora London Marathon.

Daniel and Yogi win Crufts award

The Muscular Dystrophy Campaign was thrilled to follow the success of Daniel George and his dog Yogi when they won the Friends for Life award at Crufts on Sunday 12 March. They were nominated for the award by Dogs for the Disabled and were short-listed with five other remarkable dogs.

Blue Badge Protector system launched

With over 6,000 Blue Badges reported stolen from parked cars in 2004, many disabled motorists are now too scared to display their parking badges. However, thanks to a simple yet highly effective protection system launched by vehicle converters, Gowrings Mobility, Blue Badge theft may become a crime of the past.

First UK motoring atlas launched for disabled travellers

If you are a disabled motorist, it is vital to have access to information to make your journey smoother, such as which petrol stations are accessible, where you can park when you reach your destination, and how accessible the accommodation is. For the first time, this essential information will be detailed in a definitive parking and motoring road atlas customised for Blue Badge holders.

Ippimail.com launched - email service that raises money for MDC

Ippimail is a free email service which provides you with an opportunity to raise funds for the Muscular Dystrophy Campaign, and other charities, without it costing you a penny.

MDC member campaigns to save supported living scheme

Lee Thorne, who has FSH muscular dystrophy, has been campaigning with tenants of independent flats at the Larksfield estate, Wisbech, to save them from closure.

Young Pavement Artist of the Year Competition 2006

2006 is the 21st birthday of the Young Pavement Artist Competition and to celebrate the environmental theme is Rainforests. All those who enrol will receive a bumper educational pack, giving simple details of how to put on the competition, and lots of posters and information on the theme.

New Statement about the spinal muscular atrophy baby MB life support withdrawal

The Muscular Dystrophy Campaign covers over 60 different neuromuscular disorders, NMDs, including, as in the case of baby MB, spinal muscular atrophy. We have therefore been following the unique case between the NHS trust and the parents of baby MB closely, where the court was asked to decide whether or not to discontinue ventilation treatment for the child

MDC supporter sees book published

Muscular Dystrophy Campaign supporter, Darren Finch, is celebrating the publication of his first book, Fair Target. The author's brother, Glen, has Duchenne muscular dystrophy and so Darren has offered to donate 10% of all royalties to the Muscular Dystrophy Campaign.


Support Information of Re-launch Website

The Information Point for Centronuclear and Myotubular Myopathy has been re-launched.

Eden King’s Wish

Eden King, from Norwich, has Ullrich congenital muscular dystrophy and is a full time wheelchair user. Last week, the six year old, had her wish come true thanks to the Starlight Children’s Foundation when she visited the Household Cavalry to meet the Queen’s horses.

Trustee Linda Runs for Glory TEST

Our recently appointed Muscular Dystrophy Campaign Trustee, Linda Ball, is taking part in a BBC documentary series about training for and running the London Marathon. The first episode of Run for Glory will be aired this Thursday, 2 March, on BBC 1.

Trustee Linda Runs for Glory

Our recently appointed Muscular Dystrophy Campaign Trustee, Linda Ball, is taking part in a BBC documentary series about training for and running the London Marathon. The first episode of Run for Glory will be aired this Thursday, 2nd March, on BBC One.

Muscular dystrophy research on track for clinical trials

Groundbreaking work into Duchenne muscular dystrophy has shown promising results following preclinical tests at the Oxford based company VASTox, highlighting the exciting possibility of the first clinical trials commencing next year.

MDC launched as Norwich Union's Charity of the Year

Norwich Union launched the Muscular Dystrophy Campaign as its staff charity of the year last week, when four muscley guests visited employees in York and Norwich.

Telling Stories: Understanding Real Life Genetics

The University of Glamorgan is inviting people to take part in an education project called Telling Stories: Understanding Real Life Genetics.

Could you tell your story and be part of a website that will teach nurses about genetics and genetic conditions?

Fundraising Couple Retire After Forty Years

The Muscular Dystrophy Campaign would like to extend its warmest thanks to John and Barbara Salter who recently retired after 40 years of fundraising for the charity.

Isolation of adult muscle stem cells for skeletal muscle repair

Researchers from the MRC Clinical Sciences Centre and Imperial College London, in collaboration with scientists from the Pasteur Institute and CNRS Paris, have succeeded in using flow cytometry to isolate pure preparations of muscle stem cells from skeletal muscles of adult mice (Science Express, 1st September).

Becker medical alert card launched

A new card scheme has been launched by the Muscular Dystrophy Campaign that will help people receive better medical care.

Myostatin Inhibitor (MYO-029) Trial Announced By Wyeth

The Muscular Dystrophy Campaign is encouraged by the announcement that a clinical trial using MYO-029 will be conducted in the United States by the pharmaceutical company Wyeth.

Steroids and Duchenne muscular dystrophy - some questions and answers

This page has been produced to help you think about whether your child with Duchenne muscular dystrophy should have steroids or not. It includes some of the main questions people have asked us in this situation and also gives you some further information to look up. It is not intended to replace discussion with the muscle clinic team, so feel free to ask any questions, you may have after reading this.